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Genomics & Precision Medicine

CBmE has several ongoing projects related to the ethics of precision medicine. The paradigm of ‘precision’ or ‘personalized’ medicine is spreading throughout Singapore and the world; instead of one-sized-fits-all treatments, this approach specializes treatment plans to an individual’s physical, genetic, or environmental profile. But while research into precision medicine holds great promise for improved treatment, it also raises pressing ethical questions surrounding how to responsibly gather, study, share, report, and utilize the massive amount of personal information integral to the approach.

Ethical Frameworks for Storing and Sharing Genomic Data

CbmE is collaborating with the Genome Institute of Singapore on the A*Star funded initiative POLARIS (Personalized OMIC Lattice for Advanced Research and Improving Stratification). POLARIS has developed a panel test of five genes that are regarded as standard-of-care for predicting the efficacy of existing molecular therapies gastrointestional (GIST) cancers. This test, which assays tissue stored from tumour biopsy, is available to oncologists for the clinical management of GIST cancer patients. POLARIS is proposing to assay the same tumour tissue for an additional 88 genes that have previously been reported in the literature as having potential, but unestablished, value in the diagnosis and treatment of malignancies.

This study aims to develop an evidence-based framework for obtaining informed consent to store and share the POLARIS Discovery Profile data. The study will draw on the prior literature in bioethics, social science, and best practices in biobanking and genomics, to develop a framework that reflects internationally accepted norms and standards for obtaining informed consent for the storage and sharing of genomic data from tumour tissues. The study will also employ qualitative research methods to engage clinicians and potential participants, and generate a contextualized framework that is culturally-appropriate and sensitive to local norms, systems and preferences. Findings from this research will inform recommendations on the process and documentation needed to obtain informed consent for the POLARIS Discovery Profile and share data with researchers in Singapore and abroad.

Associate Professor Jacqueline Chin will lead this project on precision genomics policy at NUS’s new Centre for Precision and Personalised Health (CPPH). In consultation with CPPH staff as well as collaborators at Johns Hopkins and Oxford, the goal is to stimulate discussion and formulate institutional policies at CPPH on two important areas in genomic medicine – reporting of incidental findings and data sharing among researchers.

The project has three components:

A pilot study of stakeholder perspective on the project topics

A forum for CPPH members and affiliates to discuss and debate the topics; and

Group-based institutional policy formulation based on the study and forums.

The project is funded by a Humanities and Social Sciences seed grant, and will last approximately 18 months. At the end of the project, the grant-holders will apply for a larger grant to expand the project scope into other areas of ethical concern in precision medicine (such as genetic discrimination, family involvement and the value of genetic information to patients) to study of the impact of precision medicine on the lives of patients.